Wednesday, May 16, 2012

When I was first diagnosed with Crohn's, I wanted to learn as much about my disease as possible. I read hundreds of websites and started thinking that I was spending hours upon hours searching for more information.

That is the reason that I wanted to start this Blog.

I hope I can provide a source of information that touches on as many topics as possible. In my research I could not find a single source to gain basic knowledge about my condition. There are many good sources but sorting through all the Medical Terminology took time because I did not know the terms being used on many of the sites.

My goal here is to provide a good starting point for people that are interested in learning about Crohn's and Irritable Bowel Diseases.

Sunday, May 13, 2012

In the last several months, I have searched for support and groups that relate to Crohns.
One of my favorites is a free phone app called GI Monitor.

Support is an important part of living with IBD's. People that have the disease or are in remission understand the daily aches, pains and habits that we deal with on a daily and sometimes minute by minute basis.

GI Monitor allows you to track your IBD symptoms such as Stool form, frequency, blood content and add custom symptoms. The app also allows you to track meals, stress levels, pain levels and medications. The app also has a social feature that allows you to communicate with other sufferers of IBD.

The group, known as "Butt Book" is very knowledgeable and friendly group of people from all over the USA and the world. You can learn about symptoms, medications, treatments, tests and procedures that you or someone you love may encounter when dealing with any of the IBD's.
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You can search facebook for other social outlets and reference www.ccfa.org. Crohns Colitis Foundation of America is an excellent place to start learning about the disease and find local support groups and events.

Saturday, May 12, 2012

Eating out at restaurants or at social functions can be a
tricky situation for people with inflammatory bowel
disease (Crohn's
disease and ulcerative
colitis [IBD]). It is especially difficult when you are dining with people
you have a professional or casual relationship with, since they are not likely
to know about your health problems. (Nor would you necessarily want them to
know.) How can you handle a high-powered business lunch or romantic dinner
without bringing attention to your problem?

Before you leave for the
restaurant, decide on what you will eat and how much you will eat. If you're
afraid that you will be hungry and tempted to eat something you shouldn't --
have a safe snack before you leave.

If you know what
restaurant you're going to, do a little reconnaissance first. Many restaurants
and catering halls have web pages that include their menus. If you're really
concerned, you can even call the restaurant and ask if they serve any dishes
you know are "safe" for you to eat.

Locate The
Restroom First

Ask the host or hostess where the restroom is located
before you are seated or right after being shown to your table. If your dining
companions don't know about your health problems, you can use the excuse of
wanting to wash your hands before dinner. This way, you know where the
facilities are located and you can check to be sure they're clean and stocked.

Skip The
Cocktails

Alcoholic drinks
may not be a good idea for people with IBD. Try sparkling water or a virgin
cocktail (or a "mocktail") if you're concerned about appearing chic
but don't want to drink. If you need an excuse, you can always say you're
taking antibiotics or other medications that don't interact well with alcohol.
Or there's always the old standby -- "I have to drive myself home so I'm
not drinking."

Watch Out For
Appetizers

Appetizers such as mozzarella
sticks, hot wings, nachos, and chicken fingers are all fatty, fried or
dairy-filled foods that might not be good to your digestive system. If everyone
else is having an appetizer and you're feeling left out, have some soup instead
or dig into the breadbasket.

Not everyone is tactful. Someone
may ask you "Why are you ordering chicken at a famous steakhouse?"
Decide beforehand how you will answer. You could mention your illness briefly
if you think it will be well received. If not, "I'm on a diet" or
"I stopped eating red meat and dairy" are also common reasons that
aren't likely to bring up more questions.

Amber Tresca was diagnosed with ulcerative
colitis at the age of 16. After 10 years of active disease, medical therapy
failed and she underwent the 2 step j-pouch surgery (removal of the large
intestine and creation of an internal pouch from the last part of the small
intestine).

Experience:

Amber was a copy editor and staff writer
for a major medical publishing house that produces specialty medical journals
for physicians. She is currently a group web producer for the same publisher,
working on several web sites that provide clinical information for healthcare
providers.

Education:

Amber graduated with a bachelor's degree in
Environmental Science from the LymannBriggsCollege
at MichiganStateUniversity.

From Amber J.
Tresca:

After my gastroenterologist found severe
dysplasia in my colon, I realized how little I knew about my disease, and how
dangerous that was to my health. I hope to raise awareness of inflammatory
bowel disease (Crohn's disease and ulcerative colitis) and other digestive
conditions, as well as reach out to patients like me who are in need of news
and accurate information.

Summer means long weekends, fragrant nights, and vacations with the family. When you have inflammatory bowel disease (IBD), summer does not necessarily come with the same anticipation it does for other people. But there are things you can do to take care of yourself and have fun this summer.

One of the chief dangers of warmer weather is dehydration. If you've got diarrhea or vomiting, you are even more at risk for developing dehydration. Be aware of how much water you are drinking during the day, and be sure to drink extra if you are exercising in the heat. You may want to consider sports drinks (without caffeine!) if you are really sweating it out in the sun.
We are all at risk for skin damage and skin cancer from being out in the sun. In addition, people with IBD may be taking medications that have a side effect of sun sensitivity. Be aware of the potential side effects of your medications, and cover up during peak sunlight hours with either clothing or sun block to prevent burns.

In
December of 2011, I was celebrating the holidays with my family and enjoying
our 4 boys and 9 grandkids. After the Christmas festivities, I felt a flu bug
coming on. I was experiencing abdominal pains, indigestion and diarrhea.

I
put up with the symptoms for a couple of weeks at which time I went into Urgent
Care due to unstoppable diarrhea, stomach pains and rear end that I could
barely touch to clean myself. My stomach pains were the worst pain I ever
experienced in my life. The doctor told me there was a flu bug going around and
she gave me medicine to relieve the cramping and recommended Imodium for the
diarrhea.

After
another two weeks with no relief I went into my General Practioner. He
initially diagnosed me with Diverticulitis, a disease that affects the
digestive tract in the Colon.
He recommended a colonoscopy which revealed that I had Ulcerative Colitis a
more severe form of the disease that affected about 70% of my colon.

I
was later referred to a Gastroenterologist (a specialist in the digestive
tract). After an MRI and another Colonoscopy I was diagnosed with Crohns
Disease. All of these diagnoses are related to the digestive tract. Colitis and
Diverticulitis generally affect the colon whereas Crohns can affect everything
from the mouth to the rectum.

THE DISEASE

In
general these diseases will fall into the family of Irritable Bowel Disease.
Most of these diseases cause extreme dehydration, extreme bleeding from the
digestive tract, abdominal cramps, urgent bathroom runs with accidents
occurring, ulcerations, Fistulas (a cyst like formation in or near the rectum),
Fissures (small tunnels from the rectum or intestine to the outside of the rear
end), and sometimes life threatening ruptures.

These
diseases cause extreme pain, frequent trips to the Emergency Room and many
trips to the restroom.. The diseases are generally hereditary and are an auto
immune disease, where the body attacks the good bacteria in the digestive
tract. There is no cure for Crohns Disease since it can occur and re-occur
anywhere in the digestive tract. Patients can experience extreme weight loss,
vitamin deficiencies and contract other bacteria and viral infections. Patients
of course experience extreme fatigue.

Many
patients find themselves carrying “emergency packages” with change of clothes,
toilet paper and many times planning a simple outing based on their knowledge
of the area and available bathrooms. Some patients barricade themselves in
their homes because they don’t want the embarrassment of multiple bathroom
trips during an outing. Many patients are totally secretive about their disease
and cannot find anyone to talk to or anyone that understands what they are
truly experiencing.

TREATMENT

They
are initially treated with very strong Corticosteroids. The steroids reduce
inflammation in the intestines or colon where the disease is appearing. One
such drug is Prednisone. This drug has severe side effects. I was going 50 plus
hours with no sleep. I was continuously eating and gained weight. I also experienced
extreme joint pain that required me to walk on crutches from one to two days
until the side effect passed. Other colon related diseases can be cured by
removing the colon and replacing it with an ostomy bag (a bag placed externally
to collect body waste) or replace the colon with a section of the small
intestine. Sometimes various medicines will eliminate the symptoms and put the
disease into remission and sometimes never recurs for months or even years.

Crohns
however cannot be cured. The treatment can vary from patient to patient, most
probably being treated with a biologic medicine. Humira is injected into the
skin like diabetes insulin shots and injected every week to every other week
depending on the patient. Remicade is considered the “Big Dog” treatment which
requires infusions that are similar to Chemo Therapy without the radiation.
Remicade requires an every 8 week infusion once the initial acclimation process
is complete.

Many
of these drugs have extreme side affects from nausea to cancer forming. Since
the biologics suppress the immune system to trick the body into not attacking
itself, a patient is more apt to contract many types of viruses and sicknesses
from their environment. Infections and other things like colds and flu are easy
to contract and hard to alleviate since the immune system is being suppressed.

When
the symptoms recur, it is called a “flare”. I have been off work for almost
five months trying to force my “flare” into remission. Short Term disability
does not cover the medical bills and monthly bills. One infusion of Remicade
can cost from $3000 to $8000. My infusions are $5000 every eight weeks. The
effect on my family members and me are emotional, physical and financial
stress. My wife having to wake up in the middle of the night two to three times
a week to drive me to the Emergency Room is physically draining when her work
start time is from 5 AM to 8 AM. My children worrying if I will be ok and the worry
of the risk of cancer forming from a weakened immune system from the Infusions
and precancerous cells found during the colonoscopy.

This
is truly a very misunderstood disease by the general public and not fully
understood by the medical community. The most knowledgeable Doctors are the
Gastroenterologists. Your regular physician cannot treat this disease. It must
be treated by a specialist. I found Mayo Clinic to be absolutely thorough and
knowledgeable in diagnosing and treating my disease.

There
is a lot of research being done on the IBD diseases. Hopefully with enough
research, there will eventually be a cure for these diseases.

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